Monday, October 4, 2010

Lupus pregnancy: party of three, please.

I spoke at a lupus conference earlier this spring, and at one point, someone in the audience asked me how I handled lupus and pregnancy. I was somewhat prepared for this question (because this seems to be a hot topic among lupites, as it should be), but I misspoke as I started to give my answer, saying, "When my doctor and I decided to get pregnant..."

Of course, laughter filled the room, which I appreciated, and then I corrected myself by saying, "I mean, when my husband and I decided to get pregnant, and when we consulted my doctor on the subject...", so on and so forth.

It was a slip of the tongue, clearly...but it's not that far off base. When we contemplated our options to have a 2nd baby, (and even more so with Deirdre), my rheumatologist was very involved. I was upfront with him about what our goals were in regard to pregnancy, what our timeline looked like, and we talked openly about how those were going to fit in to my short and long term treatment with lupus.

Johnny and I were counting on him to lead us in the right direction - we wanted his "OK" to move forward, and we needed to make sure that we weren't jumping too quickly into baby territory, both times around. Dr. S. is the most accurate gauge we have for how active my lupus is, so working with him months ahead of time to make sure I was healthy, stable and strong (not to mention on the right medication and taking the right dosages, etc.) was imperative. Having his blessing was and is key.

That said, his recommendation can't be the end all. Yes, it's important that he give us the green light, and yes, he knows better than anyone how my body is "performing", but his stamp of approval must be accompanied alongside a careful and honest reflection of how things are really going, based upon my own evaluation of my life with lupus.

Each time I ventured down the path to pregnancy, I needed to considered if, in fact, it was the right time, right place, and the right circumstances to have a baby. As much as my rheumy knows about my life with lupus...he's only looking at a sheet full of statistics, a couple of blood tests, and the symptomatic information I've given him; I have just as much responsibility to evaluate the facts (said and unsaid), as he does.

Here's what I mean:

When I tried to get pregnant back in 2002, I, of course, consulted my rheumy. I was on multiple medications, several of which I would have to come off of in order to get pregnant, but according to my blood work and disease activity, my doctor believed I was ready. Medically speaking, there was no reason I shouldn't get the green light. But did he really know (or, ahem, had I really told him) how much I depended on those meds to alleviate my morning aches and pains? Did he get that I counted on my evening meds to help me fall asleep? Did he understand how hard I was working, and how taxed my body was during the week? Did he know that I had no plans to slow down, even during the pregnancy? Did he grasp that although most of my non-joint pain symptoms (like angioedema and swollen glands) had been curtailed over the past 6 months, they were still occurring every couple of weeks? I knew all of this, of course...and while I thought I'd sufficiently conveyed this information to him, my version of "spilling my guts" in regard to my lupus activity wasn't usually as crystal clear as it should have been.

(Most of you know the rest - I tried to get pregnant...miscarried, then tried again...and went into the worst flare of my lupus history. Then, of course, I wised up, changed my crazy ways, wrote a book, started a blog, and now have a 2nd baby on the way. Thank goodness for happy endings!)

In hindsight, it's so clear that in addition to his correct analysis of the current state of my lupus activity, I owed it to myself to be honest about the condition my body was really in...and to listen to it when it called out for help, regardless of whether I liked what it was saying. The fact that I was in constant pain the moment I went off one of my anti-inflammatory drugs should have told me my body wasn't ready. But it wasn't horrific pain, and I had high hopes that it would subside once I got pregnant. Plus, I was holding fast to the fact that "my doc gave me the green light." Oh, the games we play with ourselves...

Thankfully, I've been able to learn from my mistakes. This pregnancy (as with my previous one in 2008) has been full of full disclosure, honesty, and frankness - amongst everyone involved. I'm ready to rock - and so is this baby. Johnny and I couldn't be happier...and somehow, I think Dr. S. is pretty proud of himself, too.

Today is my first time on your Blog. I was strongly encouraged to read your book and blog by one of my healthcare team members. They kept remarking how similar our stories were. I was diagnosed with Lupus in 2006 however my Rheumatologist seems to think I have had it since my early 20’s (I am in my late 30’s now). I am on a slew of medications: Azathioprine, Hydroxyquine, high dose of Prednisone, Lansoprazole, Meloxicam, Methotrexate and anti- emetics for the nausea due to the Methotrexate injections. (Plus the OTC ‘s we all love to hate) I am in the midst of my worst flare-up ever, and with deep regret, last week, I resigned from my dream job due to my Illness. I am a Registered Obstetrical Nurse. I worked in the Birthing Unit, helping mums deliver beautiful babies into this world. I thrived on the adrenaline rush of working in a tertiary hospital environment. As you may imagine, at this difficult time in my life I am anxiously awaiting your book in the mail! “Despite Lupus”! Empowering! First ‘post-it’ to go on my mirror for the morning... Despite Lupus, I have two beautiful and healthy children! Thank you Sarah Gorman for writing your blog!Kim

It really helps to hear your story. I am in the exact same process as what you described. I originally wanted to get preggers last year, but my lupus had other plans for me. So my rheummy is making wait until June 2011 to make sure my labs and lupus are stable for a year first. The others in my team of doctors (pulmonologist, and high risk ob-gyn) agree. It's not just my hubby and I that get to decide when the time is right, but lupus and the docs also get to participate. The good news is that I'm clearing hurdles so far to help make it possible for me to get preggers around June 2011. Thank you for writing. It's great to hear others share their stories!

just read ur blogg and it helped me open my eyes thank-you...ive had lupus 20years now i was only 12 when i found out i was told never to get preganant (well that was the old days) but 4 years ago me and my husband decided to try so i went to my rhummy dr and he was over the moon and he helped me have my little boy, but there was 2 unplaned complations he was born with downs syndrome ( wouldnt swap him for the world) and my husband died when my son was 6 weeks old, now im settled with a new partner and want baby number 2 but family members are now trying to scare me by saying i might die or i might have another special needs child with alot more problems has any1 any advice for me please

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Sara Gorman

In 2001, I was diagnosed with systemic lupus, at the age of 26. I had been married less than 6 weeks and was at a highpoint in my career in television production. While I fought to keep hold of the life I'd known - demanding, yet fulfilling career, busy social life, packed vacation schedule - after four years of running my body into the ground, I realized I was fighting life, not living it. Thus, I downshifted almost every aspect of my life. I let go of my career and made it my number one priority to get myself back in good health. I'm proud to say that I've reached my goal, but work each day to maintain that healthy lifestyle. despite lupus. My book details the steps it took to reach that goal. A native of Indiana and graduate of the University of Notre Dame, I reside in Alexandria, Virginia with my husband, two young daughters, and pug dog.